The thoughts of a nurse with type 1 diabetes

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Tag Archives: electronic health records

For the last decade, or so it seems, in my professional technology life, we have been talking about the holy grail of interoperability. So, what on earth does that mean? I’m basically a non-techie and my understanding of interoperability is that we can send information around the system, from one place to another, and when it sets off it doesn’t lose any meaning as its transferred and arrives with its meaning intact. In other words, the information is available and understood by the person that receives it and this is as the sender intended. Standards are key to making this happen and at last this is starting to happen. Have a look at the PRSB and Interopen.
Wow, I mean that means we can share information using standards and free up information that have traditionally been effectively locked behind electronic walls.

Freeing up information to flow around the system comes with some issues and in our endeavours to make it flow I am not sure we have thought through some of the consequences of all this data arriving at the point of care, in a multi-professional context, that centres around the care of an individual person.

Back in the olden days, when I was a ward sister and subsequently investigating complaints, I was often faced with large piles of paper notes about an individual patient. They were hard to plough through. There were some tricks that everyone used to use to get to the essence of what had been happening to a patient. At the back of the notes there were, usually in reverse date order, a set of correspondence between different doctors; an admission referral, a discharge summary, letters from clinic and so it went on. That’s where you started to get the best picture, a timeline, of what had been going on.

I know that we are working on standards that provide similar summaries of episodes of care which is brilliant. They will provide a much-needed way of navigating a person’s care in a timeline.

The challenge comes for those areas and professions who may be less practiced and used to summarisation; nursing for example.There is a risk that all this machine processable information will flow into records (maybe alongside information sent by patients too) and we won’t be able to see the wood for the trees! Imagine if you had to review every piece of information in one of those fat sets of paper notes and you were on a busy MAU. It will be like the quote from Mitchell Kapor: ‘Getting information of the internet is like drinking from a fire hydrant’. How will we ever know what is important and what can be left?
Some professionals already have solved this problem or at least started to do so. GPs, the most experienced Health Care Professionals in using electronic records, already understand the value of summaries and lists but these operate in one environment only.

How are we going to prevent this information that will be flowing around systems becoming overwhelming? How will we make it so that clinical staff do not feel the need to review every piece of information? Where will we stand if we fail to review once piece of information amongst the many?

It seems to me that we might need to think about a longitudinal record for a citizen and stop seeing records as a patchwork of systems connected by standards. If we fail to summarise, to prioritise, and to recognise that everyone can’t read everything, how are we going to sort out the most useful information from the most mundane? How can machine processing help us (or can it)? How will we share the piles of data across all the professions?

What I do know is that this affects the way nurses and probably others need to think about the way we keep records. If we don’t we will drown in a deluge of electronic information and potentially be no better off than we are today.

Perhaps we can just let the citizen take responsibility for the timeline? But that probably won’t work for everyone.

Many years ago I learnt a very hard lesson. It’s about good intentions but still getting it wrong. We all like to think that our contribution to care is visible and valued by others but do we really take the time to understand the perspective of others who support patients and just as importantly what putting the patient at the centre really means?

Three of these nurses worked at the site I did! It was a long time ago now!

My lesson is from the time when I worked at NHS Direct. It was a fantastic time we were breaking new boundaries and doing things across the country that hadn’t been done before. We were proud of our nursing assessment process. I was responsible for the technical system we used; not the algorithms, but the system functionality, that is how it works. We regularly referred callers to speak to or see the doctor in out of hours care. We were one of the first sites to integrate these services and we had a great relationship with the clinical leaders in that organisation. Providing seamless care was our aim across both organisations.

I was trying to develop a system whereby in our electronic referral to the doctor we included information about our assessment. The options were limited. We held a history of the full triage, all the questions asked and all the yes and no responses. Of course for a complex assessment this could be many many questions and as far as the nurses were concerned all of those questions were important, they all added weight to their referral. They were proud that they had done a comprehensive assessment, and wanted the doctors to see what they had done.

The doctors decided they didn’t want it- a stand off!

A difficult challenge to us at NHS Direct! I held firm. Surely they needed to understand why we had made the referral?

This went on for a while. We didn’t understand why they were so resistant, how could they refuse clinical information about someone we thought was ill enough for them to need to see them! Finally, in my wisdom, I decided I needed to find out more and persuaded one of the doctors to let me spend some time with them on a night shift. Arguably I should have done this earlier but, as you know, we all live and learn!

In the car in out of hours, in those days, the doctors were receiving referrals from the nurses directly and they only way they could view the referral was to print it off on a tiny portable printer. The doctor showed me what happened if he printed it off – it rolled out like an out of control Andrex* toilet roll….. Clearly not the communication that the nurses or I expected.

I learnt lots of things from this experience; a reminder of the need to listen, that we were not always the most important, that being proud can get in the way sometimes but most of all to stay focused on patients and their families. Fortunately I was able to put it right and improve what we did. We created a system where the nurses could create a short summary to transfer to the doctor; a better solution all round.

I think the lessons that I learnt then may be useful today too……

It is true to say that I really do feel that informatics is finally here to stay. Every meeting I attend everyone is talking about how important it is that everyone can see information about patients/citizens wherever they access services, that we need to reduce duplication and that this will contribute to a better patient experience. Sharing information is discussed as a fundamental enabler for service transformation. Excellent! I at least don’t have to have that debate any more.

But then, I am rightly challenged on why do we have to ask for this now, why isn’t it here already? Surely if banking can do it we can? And so it goes on. I have worked with some of the most brilliant technical folk, they are so clever and awesome and I feel so lucky. They tell me that technically what we need, as an enabler for service transformation, can be delivered – so what’s stopping us besides money?

I am starting to wonder if the problem is similar to the one I faced at NHS Direct.

Everyone thinks that their part of any ‘record’ system is the most important, as did those nurses. There are many many conversations that loop round and round about standardisation of records, terms, datasets and about sharing agreements. But no one ever gives anything up. Equally the information governance debates centre on why not, rather than how can we, scaring the living daylights out of staff. And round we go. Although it’s never personal and it’s generally lovely people (most people in informatics are lovely 🙂 )the conversations loop round and round like a merry go round. I think we circle focused on our records and our contribution to care, as we did back at NHS Direct, rather than looking at the whole system and from the patients viewpoint.

I’ve started to wonder if, like I did at NHS Direct, we are looking at it from the wrong perspective. I think what many clinicians mean when they say a patient centred record is ‘my view of a patient centred record’. What’s more, I think portals, the current trend, is merely each group agreeing to share ‘my patient centred record’. Better than not sharing at all but perhaps an ‘I’ll show you mine, if you show me yours’ approach that doesn’t really focus on the patient at all. I’m not so naive as to think that we don’t need some specialty systems – intensive care is intensive care – but I still think we might have got some of the principles wrong! It leaves me wondering if informatics needs to embrace co-production in its fullest sense; that is getting patients/citizens to describe what they mean by a patient centred record in collaboration with the people who provide care and services and those clever IT folk. Once we start this conversation then perhaps we need to accept that we have to find a way towards this goal in a way that puts aside our existing professional and organisational perspectives. It may be that it’s simpler than we think? Perhaps it throws away the concept of organisational records? Maybe that’s too hard but worth thinking about surely? If we muster all our brains and hearts along with patients perhaps we could co-create a new picture of the future?

Is informatics ready for such radical approaches? So why is it that we haven’t already embraced them? I’m not sure but I suspect it’s cultural and a difficult one to crack! Informatics is more about analytical approaches and logic and not quite so often about hearts and minds. The nearest I have seen is the development of hack days but these tend to retain control in the technical domain.

But as I learnt a long time ago listening and truly hearing are key to better solutions and I wait optimistically for the conversations to change.